LIVED EXPERIENCE OF HIV+ AFRICAN AMERICAN WOMEN

167 Pages·2012·2.11 MB·English

by  Jill Peltzer

INFECTED LIVES: A HEIDEGGERIAN PHENOMENOLOGICAL STUDY OF
YOUNG AFRICAN AMERICAN HUMAN IMMUNODEFICIENCY VIRUS-
POSITIVE WOMEN

By

Jill N. Peltzer

Submitted to the graduate degree program in Nursing
and the Graduate Faculty of the University of Kansas
in partial fulfillment of the requirements for the degree of
Doctor of Philosophy.

_____________________________
Chairperson Cynthia Teel, PhD, RN, FAAN

______________________________
Elaine Domian, PhD, RN, APRN

______________________________
Martha Baird, PhD, RN, APRN

______________________________
Maithe Enriquez, PhD, RN, APRN

______________________________
Daniel Hinthorn, MD

______________________________
Dorthy Pennington, PhD

Date Defended: April 4, 2012
2

The Dissertation Committee for Jill N. Peltzer
certifies that this is the approved version of the following dissertation:

INFECTED LIVES: A HEIDEGGERIAN PHENOMENOLOGICAL STUDY OF
YOUNG AFRICAN AMERICAN HUMAN IMMUNODEFICIENCY VIRUS-
POSITIVE WOMEN

______________________________
Chairperson Cynthia Teel, PhD, RN, FAAN

Date approved: April 9, 2012
3

Abstract
Human Immunodeficiency Virus (HIV) infection continues to be a significant public
health concern for women of color. In the United States, approximately 290,000 women
are HIV infected. African American women are disproportionately affected. Although
they account for 12% of women living in the United States, 64% of women diagnosed
and living with HIV infection are African American.
A review of the literature reveals that there is little research exploring the experiences of
young African American women living with HIV. Additionally, spirituality and self-care
practices positively influence the lives of individuals living with HIV infection. Few
studies have explored these concepts among young African American women. Thus little
is known about how young African American HIV infected women live with HIV, how
they perceive spirituality in the context of HIV, if they draw on spiritual practices to
assist in the management of their disease, and little is known about their engagement in
self-care practices.
The purpose of this study was to explore the experience of young African American HIV
infected women, the meaning of spirituality in their lives, and how they engaged in self-
care to manage their disease. Heideggerian Hermeneutic phenomenological methodology
was used for data collection and analysis. One pattern, Infected Lives, and four themes,
Living Alone with HIV, Living with Unresolved Conflicts, Living with Multiple Layers
of Betrayal, and Living in the Everydayness of HIV were developed and interpreted from
the stories shared. The pattern and themes portray the very complex and challenging
experiences of young African American women living with HIV infection. They have
felt alone and abandoned, betrayed and discriminated against in their interpersonal and
4

social systems. Facing a life-threatening illness, they were often dealing with conflicts of
hope and anguish in the relationships with their children, being externally strong, but
internally feeling fragile and vulnerable, and caring for themselves and caring for
families. In the everydayness of living with HIV, they had to cope with unrelenting
depression and other physical symptoms of HIV and/or medication therapy. In this
everydayness, they engaged in self-care activities that included spiritual and family
support, which provided strength to live with a chronic illness.
Nurses and other health care providers need to understand the everyday experiences of
African American women living with HIV to assure holistic, culturally competent care.
Depression and other mental health issues need to be addressed through culturally
appropriate assessment and interventions. Through comprehensive education the public
needs to be better informed about HIV/AIDS to eliminate stigmas related to this
diagnosis. Health care policy should address health disparities experienced by this
population. Further research is suggested, including the development of telephonic
interventions designed to reduce depression and community based participatory research
to develop culturally appropriate nursing interventions for attaining optimal health among
this population.
5

Dedication
This dissertation is dedicated to the eleven beautiful young women who welcomed me
into their homes and openly shared their experiences living with HIV – I cannot express
my gratitude that you were so willing to share your stories with me; to my boyfriend,
Forrest, who has believed in me every step of the way in this journey; to my family who
have also cheered me on, from their homes in Atchison, Olathe, Chicago, and Hamburg;
and lastly, to my Mom, who I know is sending me her love and support from Heaven.
6

Acknowledgements

I would be remiss if I did not thank those individuals who were influential in assuring my
success as a doctoral student and in the completion of this important research study:
Dr. Cynthia Teel, your guidance throughout my doctoral program has been instrumental
to my success as a student and future researcher. You have been an incredible mentor
through my doctoral journey. Dr. Elaine Domian, your guidance and assistance with the
analysis of the data was invaluable in helping me formulate the patterns and themes.
Additionally, you have been a wonderful mentor to me as a qualitative researcher and
public health educator. Dr. Martha Baird, your input regarding further implications from
the perspectives of culturally competent care and psychiatric-mental health nursing has
helped me to develop further ideas for research. Dr. Maithe Enriquiz, your meetings with
me to talk about my ideas for research grounded me in my abstract ideas to develop this
research study. I also appreciate all of your wonderful ideas for recruitment. Dr. Daniel
Hinthorn, your discussions with me about HIV and spirituality were the impetus to study
spirituality among this population. Dr. Dorthy Pennington, your willingness to meet with
me, as a doctoral student, to discuss the issues of African American women living with
HIV and share your ideas and research to support my dissertation were valuable to the
development of this study. Kathryn Sharens, APRN, your continual dedication to
recruitment for my study is commendable. I am not sure I can thank you enough. Dr.
Leonie Pallikkathayil, your dedication to your students’ success is wonderful. Forrest
Whitlow, M.Div, your in-depth discussions with me about Heidegger’s philosophy was
instrumental to my deeper understanding of his work, which was necessary for the
methodology and discussion of the findings.
7

Table of Contents
Acceptance Page 2
Abstract 3
Dedication 5
Acknowledgements 6
Table of Contents 7
Chapter One: Background 10
Significance of the Problem 12
Significance for Nursing Research 15
Aims & Research Questions 16
Chapter Two: Review of the Literature 18
Epidemiology of HIV Infection 18
Antiretroviral Therapy 19
Cultural and Social Contextualization of HIV Infection 23
Gender, Sexuality, and Violence 23
Race, Discrimination, and Mistrust 25
Class, Poverty, and Access to Healthcare 27
Self-Care Behaviors 28
Self-Care Behaviors among African American HIV-Infected Women 29
Spirituality 31
Spirituality among African American Women 32
Spirituality and African American HIV-Infected Women 34
Summary of the Literature 39
Gaps in the Literature and the Need for this Research Study 39
Chapter Three: Methodology 41
Philosophical Background of Heidegger 41
Heideggerian Hermeneutical Methodology 45
Researcher Training in Heideggerian Phenomenological Research 46
Sample 46
Table: Description of Sample 47
Recruitment 47
Assistance from Case Managers 48
Assistance from a Metropolitan Infectious Disease Clinic 48
Assistance from an Academic-Affiliated Infectious Disease Clinic 49
Amendments and Compensation 49
Data Collection Procedures 49
Setting 49
Interview Process 50
Data Analysis 53
Methodological Rigor 56
Ethical Considerations 59
Chapter Four: Findings 61
Participant Introductions 61
Alisa 61
Diana 61
Dion 62
8

Dutchess 62
Jacqueline 63
Katelyn 63
Lizbeth 64
Mikayla 64
Natalie 65
Priscilla 65
Reandra 66
Pattern and Themes 66
Figure: Inter-relationality of Pattern and Themes 67
Infected Lives 68
Living Alone with HIV 69
Living with Unresolved Conflicts 72
Living with Multiple Layers of Betrayal 78
Living in the Everydayness of HIV 85
Chapter Five: Discussion and Conclusions 93
Discussion 93
Limitations 110
Implications 111
Implications for Education 111
K-12 Education 111
Health Professions Education 112
Health Professionals’ Life Long Learning 113
Community/Public Education 114
Implications for Practice 115
Implications for Policy 119
Implications for Research 120
Conclusions 122
References 124
Appendix A: Recruitment Informational Flier 138
Appendix B: Letter of Support from KC Free Health Clinic 139
Appendix C: Letter of Support from Ryan White Case Management 140
Appendix D: Letter of Support from Truman Medical Center 141
Appendix E: Letter of Support from University of Kansas Physicians 142
Appendix F: IRB Approval Letter 143
Appendix G: Informed Consent Form 144
Appendix H: Demographic Form 149
Appendix I: Referral List 150
Appendix J: Data Analysis Process 151
Appendix K: Second Stories 152
Alisa’s Story 152
Diana’s Story 154
Dion’s Story 155
Dutchess’ Story 156
Jacqueline’s Story 158
Katelyn’s Story 159
9

Lizbeth’s Story 160
Mikayla’s Story 162
Natalie’s Story 163
Priscilla’s Story 164
Reandra’s Story 166
10

Chapter One: Background
The World Health Organization (1958, pg. 1) defines health as the “state of
complete physical, mental, and social well-being, and not merely the absence of disease
and infirmity”. A comprehensive understanding of young African American Human
Immunodeficiency Virus (HIV)-infected women’s health has remained elusive, because
how these women live with HIV-infection has not been extensively explored. To receive
the diagnosis of HIV infection is often devastating. It is associated with a wide range of
experiences including emotional distress, helplessness, low levels of self-esteem,
internalized stigma that can result in guilt and self-blame, and uncertainty (Kylama,
Vehviläinen-Julkunen, & Läderirta, 2001). The effect of HIV on all aspects of an
individual’s life often precipitates a search for meaning and for ways to manage the
disease (Woodard & Sowell, 2001). Despite the advances in the medical management of
HIV infection, living with a chronic, incurable, and eventually fatal disease presents
multiple challenges and has significant physiological, psychological, social, and spiritual
implications.
Challenges are worsened when individuals have many stressors, such as poverty,
that compete with their ability to fully engage in treatment regimens to manage their
disease. Spirituality and health promoting self-care activities may assist individuals in
managing their disease and may mediate the relationship between multiple stressors and
disease outcomes. Spirituality has been linked to improved health outcomes (Morse,
Morse, Klebba, et al., 2000). Numerous studies focusing on spirituality and illness
support that spirituality and religious practices positively influence health promotion and
coping with multiple stressors in the context of living with a chronic illness (Tuck,